Looks like the boxes people have received that were not requested are the free box for immunosuppressed to use to get the antivirals so are for symptomatic covid after 1st April. No other free tests by the sound of it for household.
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@Fullofbeans
Yes, I am at Derriford, I was given a phone number, and they did seem to know what I was talking about, itâs just no-one has called back.
111 gave me the Cornwall cmdu unit number, to phone, and I will call if no-one has got back by 10.00am, but not sure if thatâs who will be phoning me, as Derriford is Plymouth/Devon (Iâve been around this loop before)
âŚI donât want to be calling people, as it will be murphyâs law, that thatâs when cmdu tries to contact me.
Thanks for the info on Birch Ward,
Great you have your lftâs
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Gosh, none of this is easy, especially when youâre not feeling well, @heatherthomas. I hope someone calls you this morning, and that you get the treatments quickly. Yes, it doesnât help being in Cornwall but having a Devon hospital - Iâm in the same boat. It complicates things. Best of luck with it all, and hope you feel better quickly.
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Dear @heatherthomas, please let us know if you need us to call for you? I am so sorry that this process has been so challenging, please let me know if you need my help. Gemma
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@GemmaBloodCancerUK
Hi Gemma, I think I do need someones help to shake a few trees, I phoned the number 111 gave me, they never heard of CMDU, when I explained, they said they would take my details, and get someone to phone me back - Iâm not hopeful
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@GemmaBloodCancerUK
the cmdu phoned me back, it was the referral from 111, they are the cornwall cmdu
(which means the plymouth one is still lurking somewhere)
They have said they normally refer to Cornwall, who then refer to Plymouth, but they will refer me to both at once.
They canât access my medical records, as Cornwall cmdu does not have access to Plymouth Derriford records. (Which is very stupid, as Derriford is the main hospital this side of Bristol, and where nearly everyone in SE Cornwall goes)
Also, they said that they do not have essential thrombocytheamia, or hydroxycarbamide on the list that needs antivirals, but they would refer me anyway.
and not to expect a call back today, they are very busy, it will probably be tomorrow
edited to add - I checked the covid rates, the UK average is 880 per 100,000, Cornwall is 1487(updated yesterday), and Plymouth is 1219 last week, they donât update their figures until later today, but Cornwall was only 1240 last week, so I think they are all pretty busy
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Hello @heatherthomas, thank you for the update and whilst I appreciate they are busy it does not mean you should be waiting so long. I am pleased you have been referred. If you are happy to give me the following details (direct message on the forum for your confidentiality):
Name
NHS no.
Diagnosis
Treatment
GP name
Treatment Centre
Postcode
We can take the issues forward. Remind me when your first positive test was? Will you be 72 hours this evening?
Gemma
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@GemmaBloodCancerUK
Next Update, I have been triaged through, someone will contact me today or tomorrow, to have an infusion, possibly this week.
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I am glad you have been contacted today @heatherthomas, hoping that you get your treatment soon. How are you feeling this afternoon? Gemma
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Thank You, Iâm feeling a bit better, mornings are normally worse
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I am concerned to hear that hydroxicarbomide and ET are not on the list of criteria to receive the antivirals. I have been merrily carrying on with my life thinking that they will save me if i catch. Now i am worried i wont be eligible. Hope you get sorted soon.
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If you can persuade them to send you to triage, then you should be fine
111 send you to cmdu
itâs not on cmduâs list, but if you can sound like you know you are immunosuppressed, blood cancer, and on chemo, they put you through to triage
The triage was a haematologist, so needed no persuasion
The thing is, with me chasing, and chasing, itâs still taking a long time itâll be friday at the earliest
119 was useless, I wasted a day, waiting for someone to call back from them, and they never did,
and I wasted half a day, waiting for Derriford to get back to me
it was 111 that pushed it through ⌠and the help of blood cancer UK here
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@ilivesunshine Please be assured that as someone with Essential thrombocythemia (ET) and on Hydroxycarbamide, you would be eligible to be referred for an assessment by a CMDU should you test positive. We would encourage you to get in touch with your GP and/or treatment team to discuss the plan for if you did test positive as this may offer you some reassurance and guidance. You may find our webpage on accessing treatments useful in your conversations - Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK
We are feeding back to NHS England the difficulties some people with MPNs are facing when trying to access Covid treatments, as we are keen to support the NHS in making this process as efficient as possible for our community. Only at the end of the phone or email if you want to talk this through further.
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Thankyou. I have a routine telephone appointment with hematology in a couple of weeks so i will discuss it then assuming i manage to avoid catching in the meantime. My GP doesnât seem very well informed. I am still waiting for him to ring me back with an answer to a question i asked him about antivirals at least month ago He said he didnt know but would find out and ring me.
I have been trying not to worry too much about catching it. I think i have got away with flying home from Spain despite the rules on mask wearing changing whilst we were away. No masks required! I wore 2!
Been back 10 days now and feel ok.
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@Alice_BloodCancerUK
Cornwall CMDU told me that Essential Thrombocytheamia, and Hydroxycarbamide were NOT on the list for referral to Triage,
I said it was blood cancer and chemo, they still werenât sure, they asked me to spell hydroxycarbamide, I also told them it used to be called hydroxyurea. They repeated it was not on the list for referral.
I then told them my haematologist said I was to get anti virals, and I had also had 4 jabs, with my 5th due, they did then refer me, but I had to push very hard⌠they said they would do it, even though they wouldnât normally, as it wasnât on the list - and that triage would make the decision (it sounded like they didnât believe me, and I wouldnât get past triage anyway)
Once I got to Triage, It was fine, but Cornwall CMDU needed persuasion
I say it was fine, they are going to give me an monoclonal infusion - someone is going to call, guess what - they havenât, but basically, if the appointment doesnât happen by tomorrow, then I donât think itâs worth it, as I would have missed the boat⌠and the side affects of an infusion, will then probably outweigh the benefits, given it will be so late
âŚ
I have had a lot of struggles to get the right things during this, but normally I just keep bulldozing through,
This though, when feeling really unwell, has been the worst, I do actually feel like the fight is not worth it. I am not chasing any more, if they call, they call, if they donât, Iâll ride it out without them.
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So sorry for what you have been through. I hope you are feeling better soon. I am going to make enquires about the situation in my area. East Yorkshire. I have a letter saying i may be eligible but after what you have been through i am doubtful
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@heatherthomas it really shouldnt be that difficult to get medical treatment that is advised for us with blood cancer. It seems as if lots of fantastic research has got an answer for our group but noone can actually implement the advice. Hope you are feeling better despite the stress it has probaby caused you
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@heatherthomas, Iâm so sorry and annoyed for you that youâve had such a fight to get anywhere with this. Youâve persevered when most would have given up. Youâre feeling unwell. This is just not on. I really hope you get the call today, and the monoclonal antibodies very soon.
Iâm in Cornwall if you need anything, Heather. Shopping? Paracetamol? Even if weâre other ends from each other, Iâm happy to whizz over with anything you might need. Iâve nothing pressing on. Just message me if I can help.
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@heatherthomas Iâm so sorry youâve had so much trouble with it. Weâre going to feed this back about the Cornwall CMDU. I do hope you get contacted soon - please donât hesitate to get in touch with us on the support line if we can support you with this in any way. Or if youâd rather keep the phone lines free please feel free to email us at support@bloodcancer.org.uk. In the mean time though if your symptoms get worse weâd really encourage you to get urgent medical attention.
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@Alice_BloodCancerUK
It appears I have gone backwards in the queue
I have just had a phone call from Derriford, to say I should be expecting a phone call, today or tomorrow, to triage me to decide if I need antivirals or not.
I explained I had already had that call from Dr Thompson, and I was expecting a call to let me know when my appointment was for the infusion
they said they had no record of that, theyâdâ see if they could contact someone to call me back, but they were only standing in, and as so many people were off sick , she wasnât sure if she could do anything more, as she just had a list of people to call, just to let them know something was happening.
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